Opting out of HRT

Hiiii… I read a lot of posts on here (life saver for me) but I have not posted much. However, I was very curious about one topic- HRT.

I had the standard Chemo/Rads/Brachy in April 2022 and opted out of HRT. I think I have tolerated the menopause symptoms well and oddly enough might feel better with the lack of hormones. I am curious to know if anyone else took the no HRT route, and how they are doing. I am 33 and am worried that my decision to not take it (out of precaution for other cancers) will negatively effect me in other ways.

A little side note- I very rarely use my dilator (oopsies) and have not had sex in over a year. The thought of doing it is terrifying because of the anticipated dryness and pain. What is everyone’s experience with sex post treatment?

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Hello!! I just finished treatment and had my appt with menopause specialist last week. I had (have) the same concerns about HRT, however she assured me my cancer was not “estrogen fed” and this would be safe. My oncologist and primary care doctor agree as well. It’s terrifying, but I’m also concerned about potential effects not taking the HRT could have down the road. I’m 41 and started the patch a few days ago. I don’t plan to be HRT for a long time, but as of now it seems it the best decision. It really is a hard decision to make, but you must be comfortable with what is best for you!

Hi,

I had a much different experience with the HRT. My oncologist refused to prescribe and said if I wanted to try it I should go elsewhere, so I went to see a gynecologist who said I should do the lowest dosage possible. When I went to the pharmacy to pick it up the pharmacist refused to give me the patches because of my history with cervical cancer. When she finally got the approval to give me the patches I read the back and was like “uh oh… these side effects look concerning” so I kept it in my fridge and it eventually expired. I eventually just learned to live with the hot flashes, and feeling old AF all the time. The symptoms I guess to me where’d enough to risk the side effects listed on the HRT. Then again, I did chemo and radiation and the stuff is far more toxic and those potential side effects were equally as concerning lol.

Are you in the UK or US?

Gosh this worries me!! I see so many mixed opinions that I wonder the best way to proceed. I was convinced I was going to decline HRT, but then after my appt I was worried about what could happen if I did so. My symptoms are not terrible, I’m only taking it to prevent future issues. Hmmm…
I’m in the US… Pennsylvania. How about you?

I am in the US too. I am from Colorado, but have lived in Florida for the last few years.

I wouldn’t be too worried. It sounds like the majority of people end up taking HRT. I, myself might start taking it. I was just hoping I could hear from someone who didn’t to see if the risks of not out weight the risks of taking it. I will talk to my oncologist about it again tomorrow at my appointment to get her opinion. Let me know if you end up liking it or if you chose to stop it, after you’ve started.

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I sure will!! Let me know what your oncologist has to say. I’m curious. I’ll keep ya posted!

Read books about menopause and HRT like Davina McCall’s which are up-to-date with the latest research and give lots of information. Here’s the link to US Amazon:
“Menopausing: Book of the Year, The British Book Awards 2023, and Sunday Times bestselling self-help guide, to help you cope with symptoms and live your best life during menopause”
https://a.co/d/fwU0Vtl

In terms of possible risks of HRT, many stem from The Women’s Health Initiative study from 2002 which was seriously flawed in its conclusions about breast cancer:

  • It enrolled primarily women well beyond menopause (mean age 63 years, mean time since menopause 12 years), with only 30% of the cohort under 60 years of age
  • Nearly 70% of the participants were overweight (a major risk factor for breast cancer)
  • Half were current or past smokers (another major risk factor for breast cancers).
    Other studies do show that some hormone therapies could increase the risk of developing certain types of breast cancer, but that was from oral oestrogen, not the patch or gel form which are the ways it’s given these days, and old types of progestogen not modern bio-identical ones.

Positive effects of HRT include: lower risk of heart disease, osteoporosis, osteoarthritis, type 2 diabetes, bowel cancer and dementia (see R. D. Langer, H. N. Hodis, R. A. Lobo & M. A Allison (2021) Hormone replacement therapy – where are we now?) https://pubmed.ncbi.nlm.nih.gov/33403881/

Oestrogen and testosterone (the third hormone that we have up until menopause) help keep the vagina healthy (reduce risk of stenosis) and helps sex drive as well as general energy levels.

I’m in my 60s and on HRT for more than 15 years. I’ve read lots of research to work out if it is best for me, especially after 10 years when doctors sometimes want to take you off it. I want to be on it for life!

It’s not always easy to work out what might be best for you so do get unbiased info by checking out modern research.

Hope all goes well for you :heart:

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@Hayhay10 any update on your plan with HRT? Did your oncologist have any further input on it?

Hey lovely… like you I was treated with chemorads in 2021… I also opted out of HRT and managed it with supplements etc until October last year however the symptoms started to ramp up, I was constantly agitated with low energy and was just not feeling my best… oncology suggested HRT again and I was reluctant but as osteoporosis runs in my family I agreed to have a bone density scan and said to myself if it shows I’m at risk of osteoporosis I’ll go onto HRT

Well the bone scan showed osteopenia which is early stage osteoporosis… I’m 42 and have come through stage 3c cervical cancer and don’t want to spend the rest of my life with osteoporosis so I’ve gone onto HRT

I’ve tried the gel but have since gone onto the spray which is working fab for me

Lots of love xx

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Hiiii,

So the Oncologist basically said the same thing she said before- she cannot help me but I can see a gynecologist who can and that it is up to me to weigh the risks of taking vs. not. I read the post from Clairey1610 and I have some of those same symptoms of moodiness and just low energy, so I think I will schedule an appointment to talk to my gyno again. How are you feeling since taking it?

Wow, they make a spray? Like a vaginal spray or an oral spray that is systemic? I think I may give it a shot. I am somewhat young still and want to feel the best I can too.

Yes lovely it’s called lenzetto spray… you literally spray it on the insides of your forearms and it absorbs into your skin pretty much immediately… so I have the spray and then take the progesterone tablet alongside xxx

I had radiation in 2019 for a stage 1b1 recurrence and was put on Premarin, an Estrogen HRT(tablet and vaginal cream) I immediately started getting hot flashes and sweats and gained about 5-10 lbs very fast, so I stopped for a few months and the symptoms stopped. Then I started again for a couple of months. Meanwhile, I got a clear PET-CT showing the radiation treatment had worked.

6 months after this scan, my cancer recurred at the vaginal cuff, a new tumor on abdominal wall and lung nodules. I was now stage 4. I stopped taking the HRT feeling that something I’d done in the last 6 months had contributed to the recurrence. I didn’t ask or tell my doc at the time. Most say CC is not estrogen related but I had Adenocarcinoma which some places I read, could behave like endometrial cancer, which is estrogen sensitive. I figured what if I was that small % whose CC is?

I went through 6 cycles of chemo(Taxol, Carboplatin & Avastin)in 2020, and on the side, did an alternative protocol of 4 “repurposed drugs for cancer” (Mebendazole, Metformin, Doxycycline & Atorvastatin) which I’m still taking to prevent recurrence). I was very lucky to respond well and got a clear PET-CT at the end of 6 cycles. The stats for recurrent metastatic CC are not good (17%) so I was lucky.

After getting another 2 clear PET-CT scans in the following 6 months, I told my oncologist about my HRT theory and that I’d stopped taking it and wanted to know if he recommended I get back on it. He said NO! Don’t change anything you’re doing! I’ve asked several other oncologists, NPs, PAs about this and they said the same.

I continued to have NO symptoms of menopause. BUT because the main reason they gave me HRT initially (I was 46) was to protect my bone mass, I decided to get a bone density scan in 2021 and again in 2023. Both showed mild osteopenia. It was stable and my regular Dr said I can prevent developing osteoporosis by simply staying active with weight bearing exercise and ensuring adequate calcium and vitamin D status, which I do. And I’m still getting PET-CT scans every 6 months and so far, still NED (No Evidence of Disease)

I feel healthy overall, still no hot flashes or weight gain. Except one time when I ate too many soy foods (tofu, edamame, soy nuts) over a couple of days and got hot flashes. So I think my body is sensitive to estrogen in some weird way.

I ofcourse don’t blame HRT fully though. My cancer was very aggressive and fast growing as my radiation oncologist told me at the time, so it responded well to radiation, before returning. It’s a double edged sword. It’s impossible to know what factors contribute to one’s good luck or bad luck.

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Ahhh! My cancer was adenocarcinoma. Makes me worry so much. All my docs reassure me, however when I read this (and other similar posts) it makes me question being on HRT

Hi, doing some research just now, some adenocarcinomas can be hormone-sensitive. But not all? Did they test at the time or is there a way of testing to see if that’s the case for you? Then you’d know more about the risks of HRT for you.

There are other non-HRT approaches that can help with some of the effects of reduced oestrogen due to menopause, as you say calcium and vitamin and for bone strength. Weight bearing exercise helps with that too. There are non-oestrogen treatments for vaginal dryness and other menopause symptoms if you get them too.

It is such a tough decision to make. I have been having bone density scans and all is well. They did say “you are a skinny white female” so just be careful… I may read into some alternative medicine, supplements and how to reduce the symptoms naturally first. When I eat really well and work out I really don’t experience the menopause symptoms, so I may work hard to get back to better routine and then talk about the HRT if that doesn’t help.

Jjww- thank you for all the information. And wow, you’re a real inspiration!

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